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Autism spectrum disorder as a lifelong condition

12 October 2009
By Dr Elisabeth Hill
Senior Lecturer in Psychology at Goldsmiths University of London
Appeared in BioNews 529
Most of us are familiar in some way or another with autism spectrum disorder (ASD). We have seen news reports, watched films or documentaries trying to explain this puzzling condition and showing examples of a child's unusual social, communication and repetitive behaviours. We may know a child with ASD or have a child with ASD. Recent evidence suggests that about one per cent of the entire population (one in 100 people) fall somewhere on the spectrum (1-2). Whilst we still understand relatively little about this complex condition, we do have a good idea of how it can affect the daily lives and education of children.

But what happens next? Most service provision resources and research funding for ASD focuses in some way or another on childhood. However, children grow into adults and our understanding of the lifespan impact of ASD is poor. Until recently very little attention has been paid to the adult end of this group.

We have been addressing this question through our research into the cognitive and behavioural characteristics of ASD across the lifespan. This work has focused on those at the 'high-functioning' end of the spectrum; those whose general ability levels are sufficient to support a good level of education and independent living. While some people are highly successful (one well known example is that of Temple Grandin, a Professor of Animal Science at Colorado State University in the United States (3)), many do not fulfil their potential. It is important to profile the nature and extent of difficulties in this group in order to support affected individuals and their families. Our work and that of other groups around the world shows that the difficulties navigating the social world persist for adults on the spectrum. For example, although adults tend to have some understanding of the social complexities of daily life, these are dealt with in a routine, rigid fashion so that interaction still seems odd. Often interaction is scaffolded by the use of logical rules that have been extracted from past experience but which do not allow for subtle changes in behaviour specific to the current situation. There may also be difficulties in adapting to new situations (a change of system in the workplace or a new lodger moving in to a shared house, for example), organising a sequence of actions (efficiently planning and carrying out a shopping trip or working to an important deadline for example) and behaving appropriately in particular situations (not hiding in the stationary cupboard at work when you are needed to complete a task, for example). Living with ASD in the neurotypical world can be extremely taxing. One correlate of this is the high levels of anxiety and depression that have been identified in this group. Such mental health issues can become significant and adults often report a frustration with the medical system attributable to a lack of understanding of the true nature of autism. At this point, it is important to remember that autism is a spectrum condition: the particular difficulties vary from adult to adult and even within the same individual at different times.

Another striking factor is the low levels of employment seen in this group, with best estimates indicating that only 20 per cent of adults with Asperger Syndrome (i.e., a proportion of those at the high-functioning end of the autism spectrum) have been able to secure long term employment, and employment outcome for those with a diagnosis of autism is poorer. Case studies suggest that poor employment experience and outcome may be associated with poor mental health consequences and that a striking factor that appears to link to longer-term employment success is the nature of any support provided, suggesting strongly that supported employment schemes and employer/employee training would be a valuable use of resources (4-5). Furthermore, where adults with ASD are unable to secure employment, this places ongoing financial demands not only on their parents but also on those associated with additional care such as the benefits system, thus providing a significant economic burden to the nation (6).

In 2008, and in recognition of the lack of appreciation of awareness of autism in adults, the UK's National Autistic Society launched the 'I Exist' campaign (7). Since then, a number of initiatives to profile the situation for adults with ASD have been set up. These include the Transitions Inquiry undertaken by the All-Party Parliamentary Group for Autism (APPGA), the Department of Health's consultation on 'a future strategy for adults with autistic spectrum conditions' and the National Audit Office's report on service and provision for adults on the autism spectrum (8). It will be important to identify the key findings of these and implement them.

Dr Elisabeth Hill is advising the charity that publishes BioNews, the Progress Educational Trust (PET), on its project Spectrum of Opinion: Genes, Autism and Psychological Spectrum Disorders. She is co-editor of Autism: Mind and Brain (buy this book from Amazon UK or Amazon USA), and she has contributed a chapter to Autism: An Integrated View from Neurocognitive, Clinical, and Intervention Research (buy this book from Amazon UK or Amazon USA).

1) Baird, G., Simonoff, E., Pickles, A., Chandler, S., Loucas, T., Meldrum, D. & Charman, T. (2006). Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: the Special Needs and Autism Project (SNAP). Lancet, 368, 210-215.
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2) Brugha, T., McManus, S., Meltzer, H., Smith, J., Scott, F.J., Purdon, S., Harris, J. & Bankart, J. (2009). Autism Spectrum Disorders in adults living in households throughout England.Report from the Adult Psychiatric Morbidity Survey 2007.  London: The NHS Information Centre for Health & Social Care.
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3) http://www.grandin.com/
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4) Edmonds, G. & Beardon, L. (Eds.). (2008). Asperger syndrome and employment. London: Jessica Kingsley Publishers.
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5) http://homepages.gold.ac.uk/autismandemployment
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6) Knapp, M., Romeo, R., & Beecham, J. (2009). The economic cost of autism in the UK. Autism, 13, 317-336.
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7) http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=1558&a=15394
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8) National Audit Office (2009). Supporting people with autism through adulthood. London: The Stationery Office.
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11 May 2010 - by Dr Alex Dedman 
Autism and Asperger Syndrome (The Facts) is a welcome update of its predecessor, the singularly named Autism which was first published by Simon Baron-Cohen in 1993. The expanded title of this new edition speaks volumes about just how far the field has moved forward since publication of the first book...
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12 March 2010 - by Sally Marlow 
Mental health is a huge global concern, with one in four people experiencing some form of mental health problem at some point in their lives. Psychiatric disorders are sometimes difficult to study, as they are diagnosed on the basis of observed behaviours...
14 December 2009 - by Helen Keeler 
I had wanted to donate my eggs to a woman with fertility problems ever since having children of my own. I frequently tell my three children that I always wanted to be a mother and that every day they make my dreams come true. How wonderful it would be to help make someone else's dreams come true too....
23 October 2009 - by Sandy Starr 
The Progress Educational Trust (PET) debate 'From Autism to Asperger's: Disentangling the Genetics and Sociology of the Autistic Spectrum' took place in the UK Houses of Parliament on the evening of 20 October 2009, two days before the Autism Bill received its third and final reading in the House of Lords....
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